Status:

Lodged

Date Lodged:
28 June 2017

Calling on the Scottish Parliament to urge the Scottish Government to improve testing and treatment for Lyme Disease and associated tick-borne diseases by ensuring that medical professionals in Scotland are fully equipped to deal with the complexity of tick-borne infections, addressing the lack of reliability of tests, the full variety of species in Scotland, the presence of 'persister' bacteria which are difficult to eradicate, and the complexities caused by the presence of possibly multiple co-infections, and to complement this with a public awareness campaign.

14 September 2017: The Committee agreed to write to the Scottish Government, the UK Government, Scottish Natural Heritage, Lyme Disease UK, Lyme Disease Action, NICE, NHS boards, the Royal College of General Practitioners, the British Veterinary Association, National Farmers Union Scotland and Scottish Land and Estates. Link to Official Report 14 September 2017 (538KB pdf)

21 December 2017: The Committee agreed to write to the National Institute for Health and Care Excellence. The Committee also agreed to consider a note by the clerk at a future meeting on options for taking oral evidence on the petition once the National Institute for Health and Care Excellence guidelines have been published. Link to Official Report 2017

26 April 2018: The Committee agreed to write to the Scottish Government, and to invite the petitioner to make a written submission. The Committee also agreed to take evidence on the petition at a future meeting, to delegate to the Convener decisions on the format of the meeting and the organisations or individuals who will be invited to provide evidence. Link to the Official Report 26 April 2018

What is your view of the current testing and treatment regime for Lyme Disease and associated tick-borne diseases? Have you been failed by inadequate current treatment?

Do you agree that it is essential to improve testing and treatment and to ensure that guidance and training are developed for medical professionals?

Please add any other comments you feel will contribute to highlighting this issue.

3 in my family with Chronic Lyme lives devestated. We have spent a fortune. Research needed urgently to find a cure for what is an HIV like illness that causes immune suppression. This is a slow death for many and rapid for some. Non treatment and denial is a human rights violation

Katherine Brookhouse

23:22 on 28 Jun 2017

awful treatment and diagnois

ff

22:42 on 28 Jun 2017

I was failed by the NHS in spite of a very clear tick history. They chose to believe inadequate, not fit for purpose blood tests, in spite of me & my family informing them of the issues surrounding these tests. I contracted Lyme Disease whilst camping in the Scottish Highlands twenty three yrs ago. Previously I was a extremely fit, working mum to two young children. Doctors told me that I could not get Lyme Disease in the UK, I would have had to have visited America. I had not been out of the country!
The two tier system is ridiculously outdated & misses many cases of genuine Lyme Disease. It is plagued by false negative results ensuring many hundreds go on to be misdiagnosed & mistreated, left disabled & chronically ill with no help, guidance or support system in place for them or their families..

K baldwyn

15:49 on 28 Jun 2017

Insect borne illness is a worldwide epidemic with many emerging consequences no county can continue to look away from. Please do the right thing and help all those who suffer the debilitating effects.
God bless your efforts.

Jean Kudyba

15:47 on 28 Jun 2017

Dreadful disease. I know several people who suffer and have the most debilitating symptoms. It's dreadful the way Lyme patients are treated.

Annie Howarth

14:58 on 28 Jun 2017

More research, better GP training

Jim Bryce

11:26 on 28 Jun 2017

My husband has chronic Lyme disease and we are keen that testing and research is put at the top of the agenda. At the moment unless you have the bulls eye rash, or a positive blood test, you cannot get treatment. We know that one third of cases do not get a rash and that up to 75 percent of Elisa blood tests give a false negative. That results in a lot of people routinely being told "Its all your head" and having their lives ruined. Scotland leads the way in the UK by doing the "right thing" - please let us mark a new chapter and show the rest of world we are putting aside opinions, political or medical, and start tackling the problem of Lyme at its roots.

Polly Murray

12:26 on 27 Jun 2017

I have been aware of Lyme Disease for over 10 years. I have seen the characteristic bullseye rash on a friend who didn't have long term symptoms of the disease. However another friend didn't have the rash but has been having the symptoms of the disease for 5 years approximately. There needs to be more public awareness of the disease, how to avoid tics, what to do should you find a tic has bitten you, more GP and health professional training about treating the disease, more research in to effective treatments and more public education about how people's lives can be affected by Lyme's disease. I applaud this campaignto bring attention to the problems and issues to do with this disease whih can be so debilitating.

Jane Rubens

3:01 on 27 Jun 2017

My GPs know next to nothing about Lyme. My first diagnosis was while on holiday in Germany, from a tick bite received 3 weeks earlier from my own farm (Aberdeenshire). The second bout of Lyme was 2 years later, from another local tick bite. My GP was asking me what treatment they should give me! NHS tests for Lyme are notoriously inaccurate and need to be improved. Tick populations are exploding, and can be found in parks, gardens as well as in 'wild' places. The disease is debilitating, but with the correct treatment can be managed or put into remission. Let's make Scotland a world leader in Lyme identification and treatment!

Anne Taylor

18:50 on 26 Jun 2017

Lyme Disease needs to be recognised so those individuals can be treated.

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